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Refractory Sprue


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#1 designerstubble

 
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Posted 25 May 2013 - 08:47 AM

I've been reading up on Refractory Sprue (mainly because my diarrhea hasn't improved), and found so much info on Refractory. But some of it contradicts and I was wondering where you get the facts from? Any good websites known?

 

Is it really as much as 10% of celiacs have Refractory Sprue? And is it true that after 10 years gluten-free your chances of developing RS go down?

 

Ok, I am just generally interested too, purely because I don't know what info to trust, I know it's every Celiacs worst nightmare. Including me! But just want the facts!

 

What are the symptoms?? I know diarrhea is one. 

 

Any pointers for good articles? Knowledge is power!

 

Many thanks


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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


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#2 GottaSki

 
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Posted 25 May 2013 - 05:18 PM

10% sounds very high...haven't researched it in over a year, but seem to remember the number being less than 5%.

 

If it makes you feel any better...we were convinced I had Refractory as my annual biopsies were worse at 1 and 2 years, but thankfully at year three my biopsies were slightly improved -- still Marsh 3 but at least they were As and Bs.  I'm do for another, but my current insurance and work will postpone my next endo for some time.  I passed the four year mark in March -- and am finally healthy except for some pesky allergic type reactions.  For some of us it simply takes time to heal.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 VeggieGal

 
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Posted 25 May 2013 - 11:04 PM

From what I've been reading, like Gottaski says its less than 5%. One study said its more like 1.5% as it was found that gluten was still creeping into people's diets hence they wasnt healing. So it is very rare. The cause still unknown but thought to be long term malabsorption.

http://www.coeliac.o...coeliac-disease

I guess we just have to be patient and check for cc and other food intolerances etc and keep up with the probiotics and digestive enzymes. We'll get there :)
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#4 dilettantesteph

 
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Posted 26 May 2013 - 07:02 AM

Have a look at this study: http://www.biomedcen.../13/40/abstract

 

Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet. 

 

Some of us react to lower levels than others.

 

I hope you feel better soon.


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#5 GottaSki

 
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Posted 26 May 2013 - 07:10 AM

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO).  I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 designerstubble

 
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Posted 26 May 2013 - 12:42 PM

Have a look at this study: http://www.biomedcen.../13/40/abstract

Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet.

Some of us react to lower levels than others.

I hope you feel better soon.


Thank you, interesting reading.
I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!
I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!
Thanks again.
Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#7 designerstubble

 
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Posted 26 May 2013 - 12:54 PM

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO). I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)

Thanks Lisa
I think you are completely right. I was reading today about how underdiagnosed Celiac is, I hope they do research it better... To me it seems rather high that 5% of people get refractory, and in many cases can't do anything about it... As in with RCD 2, most people die 3-5 yrs post diagnosis? Wish I was rich. I'd sort this crap out!! I know I used to think refractory was for those who were diagnosed late in life, I guess I was mistaken hey! (Apparently the mean age is 46? )

One think I am learning is that I have to stop reading about it. I think it's detrimental to me at the moment!! It's hard not to research though in the absence of decent medical care, I feel the need to look after myself!
But I have you guys, you always set me straight. Seriously, I wish I could thank you properly, you ladies (and guys) rock!
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#8 frieze

 
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Posted 27 May 2013 - 05:50 AM

http://www.celiaccen...ory-9473/pg--1/

 

Thank you, interesting reading.
I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!
I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!
Thanks again.
Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!


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#9 dilettantesteph

 
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Posted 27 May 2013 - 06:00 AM

Gluten free Olympic athletes: http://celiacdisease...ic-Athletes.htm


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#10 dilettantesteph

 
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Posted 27 May 2013 - 06:05 AM

That sounds difficult.  In that study, some didn't get better with that diet.  I think that some have to be even more careful.  I seem to have problems even with certain produce.  I need to vet everything with challenge/elimination diets.  I've started growing whatever I can because that way I can know that it hasn't gotten cc'ed somehow.

 

I eat rice from Thailand which I wash with soap, rinsed very well.  Unwashed, it gave me a reaction.  I takes me an hour to wash 4 cups, but it is worth it to not be sick.  Plus, my son is just as sensitive as I am, and he needs to be able to attend school.

 

I hope that you are on the right track and that you get better soon.


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